Well set of scans in Boston and yet another trip resulting in bad news. It is really starting to get a little disheartening. Emma has worked extremely hard to get back most of the skills that she had lost the last time the tumor grew too much only to have another regimen of chemotherapy not do what it is supposed to. The good news (if you look really hard for good news) is that it doesn’t appear that the tumor grew so much that surgery will be required. The final determination will come tomorrow when Emma’s scans are presented before the Tumor Board at Dana Farber.
Dr. Chi said that Emma isn’t showing any negative side effects from the tumor because of the large cavity that was left following the last tumor resection. This cavity provides room for the the brain to shift without experiencing the pressure that would cause issues. I wish we could show you all pictures of what it looked like but how I would describe it would be that every portion of tumor was still there but it looked fatter. It doesn’t appear to be anywhere near the size that it was prior to the resections but a lot of the positives that came from the last surgery were diminished. The only thing that I know for sure is that whatever we do next needs to work because Emma has a long ways to go before she will be ready for another major tumor resection.
Now before I fall asleep with the computer on my lap I will try to explain what our next treatment options might be.
- The 1st option that we were presented with was the one that we had discussed as the ultimate goal of starting the Vinblastin regimen. Which would be to stay on this regimen for another couple weeks before starting a Phase 1 Trial based out of Las Angelas. This is far from an easy option because we are unsure whether or not the FDA has accepted the protocol and don’t know exactly how long we might need to wait to start this process. The best thing about this protocol is the fact that it attacks part of the pathway that the tumor uses to survive. It is a drug that behaves similarly to one of the previous regimens that Emma has been on. This option would require a change in venue where we doctor as well as an increase in travel. Seems like a dark horse of an option because of the timing uncertainty but an option that looks appealing to our family because it is using technology and knowledge that was recently developed. The major downside is the fact that it doesn’t have a proven track record that it does what it should.
- The 2nd option presented, but quite possibly the frontrunner for Dr. Chi is a regimen called TPCV a combination of thioguanine, procarbazine, lomustine, and vincristine. These drugs other than vincristine are oral drugs that are administered at very strict intervals of time and days so that the drugs are attacking the tumor at exactly the right time. This involves giving medicine throughout the day even in the middle of the night. Emma would also have to go in to infusion every other week for the vincristine. The major downfall of this option is the fact that some kids have been know to develop Leukemia 10 years after taking the medicine. This could and would be administered in Omaha.
- The last options name escapes me but I will be honest and tell you that we aren’t really considering this option because of the fact that it doesn’t have the success path that TPCV has and it has many of the same issues as TPCV.
This is all the energy that I have to explain any more currently. More information will be coming in the very near future. I wish we had much better news to share but Emma is continuing to keep our spirits high. Please keep Emma and her Doctors in your prayers of the coming days and weeks. God bless.